Halsey Blocher

I can’t remember I time at the moment where someone glorified it, but it definitely not glorious. It’s nice for a day or two, but much longer and I started to feel starved for the outside world.

Oh my gracious, yes! No matter how many time we do it, it’s still a bit nerve wracking. Like said, there’s never any reason why it should change, but it still causes some anxiety.

While I’ve never actually done it, one of the reasons that I really like having Alexa is that I can use her to make a call in an emergency if I can’t get to my phone. But as far as day to day uses, I mostly use her for music and checking the weather when I pick out my clothes. Previously, I didn’t listen to music often. I’ve always thought it a pa…[Read more]

I don’t have many aside from Alexa. I’ve considered door locks and a thermostat as possible things to consider at some point. I also like the idea of fans and shades. I might have to add those to the list.

I’ve never personally seen one, but I believe there is a way to have Alexa make coffee. I’m not sure if it can be done with something like a…[Read more]

We don’t have plans to go this year, but I’m sure it’ll be a great time. I’ve always enjoyed the ones at Disney World. I’ve never stayed at those resorts, but I love the boardwalk area. Super accessible and a lot of fun! Also, a lot of people don’t know this, but there’s a public back entrance to Epcot along the boardwalk. It’s walking distanc…[Read more]

Like DeAnn said, definitely make a list of what you will use it for. Make it as detailed as possible. Include anything you can think of, why you need the arm to do it, and why you need to that task at all. I also recommend referencing independence. Explain how the arm will provide you with that, and, as crazy as this might sound, why that…[Read more]

I’ve never done a full on detox, but definitely think boundaries are important! I always no when I’m spending too much time with my technology. It makes me feel tired, distracted, and just less cheerful. Stepping back and doing some other things for a while makes me feel more focused, more relaxed, more positive, and happier. I love books so tha…[Read more]

I guess I’m old school as well. I’m not terribly familiar with any of this either. But I’m not fond of the idea of having any more surgeries, no matter how minor. And since I don’t usually have problems with UTIs or having someone to help take me, it doesn’t really seem necessary for my specific situation. One difficulty that I sometimes encounter…[Read more]

We often do the same things. We encourage our friends to share and ask people that we know personally. We also started a Facebook page. It has a simple job application attached so they can find out if they are an eligible candidate. We’ve tried ads on a few other sites as well. Sadly, advertising isn’t usually cheap. The hardest part for us is tha…[Read more]

Generally, if someone is sick enough to be on a antibiotic, I’d probably say 3 days minimum. I know that’s less than most people would say, but it’s can be tricky for me too go much longer than that without them. I don’t have a very big staff, so if someone else isn’t available, my parents have to stay home from work. But if you can manage wi…[Read more]

The weather here has been nutty lately. It got almost to 60 this weekend, and yesterday it snowed. I’m like you and feel so much better when it gets warmer for even a little bit. I don’t even know how to describe the feeling.

I don’t know if this is a recommendable approach or not, but I throw myself into some type of work. It makes for a reall…[Read more]

Kelly, that’s so unfortunate. They shouldn’t have pushed so hard to get you something you didn’t really want/would have to majorly adjust to. I can’t believe that happened to your hand! I’ve never had any brand have such a delayed reaction. I can’t imagine how relieved you’ll be to have something else!

Alyssa I love that you named it Rizzo! Is it after the character from Grease or did you just like it? I don’t know much about permobil, but with quantum, someone can easily come out to adjust the sensitivity and speed. I would just call and ask. They may to come back out anyway to make sure you’re comfortable and make any adjustments that you…[Read more]

I was never any good at that game either. I agree that PCA probably wouldn’t appreciate that, but it would be kind of funny.

Its unfortunate that she’s choosing to knowingly endanger your health – especially this time of the year. You might just try sitting her down for an honest conversation. Share your concerns in a respectful way and let her…[Read more]

I definitely agree about the day needing to be more go with the flow. The lists for that are usually smaller things washing the sheets weekly, doing my dishes, or changing the vent filters. We try to plan more time consuming things for days that I know will be more relaxed.

I really like the picture idea! I might have to try that sometime. You…[Read more]

I haven’t heard about this yet. I’m guessing you’re right about it only going to people who receive Spinraza. What does it say it’s purpose is? Is it meant to be a way to document your Spinraza journey or is it just a regular journal? I can see your point about it maybe not being the best idea. Personally, I love journaling, but it is challen…[Read more]

My nurses have detailed lists of things to do during their shifts, both for daily things and less frequent tasks. They’ve basically made a “chore chart” of sorts for themselves. Whenever one of them does something on the chart, they put their name next to it so that it doesn’t accidentally get done twice. I know what all is on this chart as well…[Read more]

Crystal, that’s adorable! Kids really do say the cutest things!

My niece is five as well. I remember there was one time (maybe about a year ago) when my told her she was going to help take me to the potty and she’s be right back. My niece immediately declared, “Halsey doesn’t need help going potty!” Now she thinks nothing off it, but at the time,…[Read more]

Alyssa, I really like that approach to making goals! I especially like the part about giving yourself grace. It’s one of the most important parts, yet we so often struggle with it.

Once again, you seem to be one step ahead of me! This is what my next column is about. So I won’t share too much so I don’t spoil the whole thing. I don’t tend make New Year’s resolutions either, but I do like having a few goals. I planning to focus on sticking to the goals that I already had.